About an Autism Diagnosis: Grieving, being heartbroken and then accepting it.

Hiding from the Autism
Hiding from the Autism
Soon though you'll have to listen
Soon though you'll have to listen
Then along comes the anger
Then along comes the anger
What do you mean my son has Autism?
What do you mean my son has Autism?
My daughter is getting therapy! Got it?
My daughter is getting therapy! Got it?
Okay then it is Autism
Okay then it is Autism
Maybe its only slight autism?
Maybe its only slight autism?
Maybe if I do the autism could still go away?
Maybe if I do the autism could still go away?
I need lots of Autism Therapy for him.
I need lots of Autism Therapy for him.
PECS for Autistic children
PECS for Autistic children
Music Therapy and Autism
Music Therapy and Autism
ABA for Autism
ABA for Autism
Stages of accepting its autism
Stages of accepting its autism
Autism and Us
Autism and Us

Autism Acceptance

So far I’ve talked solely about my experience of coming to terms with my son’s autism diagnosis. I haven’t yet mentioned the fact that Adam does in fact have a father who is also my husband. Undoubtedly this whole coming to terms with autism saga is not easy on any relationship and unfortunately there are also many couples out there who never make it through this difficult time and do in fact crack under the pressure and end up going their separate ways.

It was only when I got to the grief stage that I started to really wonder how my husband was feeling about having an autistic son as up to that point he had stayed mostly ominously silent about the whole process. So much so that I was wondering is he getting this and how can he not be reacting more to this saga? Then one day out of the blue it was suddenly made very clear to me that my husband was in fact going through his own trauma about our son having autism.

When I entered the grief stage I was just not able to hold back the torrents of tears that engulfed me. It was like a mega Irish funeral of mammoth proportions that went on for weeks. Why my son? He is so goddamn handsome and everyone had been continually telling us that we were the perfect gentleman’s family a daughter and a now a son. Then along came Autism and blew that idyllic take out the window.

Then one day my other half came home from work only to find me swollen eyed and dejected once again. If I had been hoping for a hug or a sympathetic word in my ear today was not the day that I was going to get it.

Why are you crying now he asked me?’

I just looked at him and wondered if he had forgotten he had an autistic son?

‘Adam has autism and I can’t fix it!’ I sobbed yet again.

‘But I thought this was a great adventure for you, an autistic son, a new cause on your hands and aren’t you just after finding out you have Aspergers Syndrome too? I thought you were delighted with your new life and all the great writing material you now have?’

‘Don’t be so stupid,’ I snapped back, ‘I am only trying to make the best of a bad situation, it’s the only way I can keep myself sane right now it is my way of coping.’

‘I think its time you snapped out of it now. You have a daughter too you know or have you forgotten?’

‘Of course I haven’t, why are you being so nasty when I am just doing my best?’

Soon after my husband slammed the back door as he stormed out to his man cave in the garden and it was only then that the realization hit me like a sledgehammer.

He’s at the anger stage. All this talk about he being fine and it’s not the end of the world that our son has autism was him going through the denial stage, then the bargaining stage and now he’s at the anger stage.

Sure enough this phase of anger was followed by grief which lasted quite a while but then thankfully he does now seem to have moved onto the acceptance stage too. So thankfully our family is bruised but still intact.

So now we like to think we are all at the Acceptance stage. It still doesn’t always come easily and some days I think I am so totally there and yet other days I still think that I may never totally accept this.

Of course unlike many my own diagnosis of Aspergers Syndrome did help me a lot. It gave me the realization that me and my son had similar brains and if I think about some things in an unusual manner then it is likely to be similar to how he is thinking. So I like to think anyway. At other times I am just as sure that I have no clue what is going on inside my sons head and I yearn to know what’s really going on in there and will he ever really be able to tell me?

However, sometimes my own autistic brain is the biggest barrier to helping my son. I did a course called the Hanen program where I was supposed to teach my son play skills which were to lead on to early communication skills. My thoughts during this course were, I never learned these skills myself as a child so how can I now effectively teach them to my son?

Sometimes I think that somebody should consider a revised manual for this scenario because let’s face it is now recognized that there is a definite genetic component to autism.So now there are also a huge number of Aspergers/High Functioning Autism parents out there who are just not aware of that they too are on the spectrum. Other days I am happy and contented with my family mix of NT’s and Autistics but then something simple happens that brings me crashing right back down to earth.

The playground is a biggie for this i.e. when I see another child my son’s age and how everything comes so easily for this child i.e. things that are just taken for granted like speech, eye contact and doing normal little boy stuff. Then I see my own son immersed in his own world, sometimes looking at the other kids but at this stage not being able to communicate with them at their level and my heart feels like breaking for him.

It’s not any easier that I personally have felt so much of the pain of trying to cope with being Autistic in a Neurotypical world. It can be such a struggle at times and I worry so much for my happy go lucky, energetic son. I want to make it better for him and I can only but hope that awareness of who he is and the proper support that wasn’t an option when I growing up will make all the difference for him.

My hope is that my son can grow up to be Proudly Autistic, Optimistic, Informed and Self-assured about who he is. That is what I am hoping to give my son through our families awareness and acceptance within our family unit.

Woman asks everyone to accept autism.

Young Girl with Autism

More by this Author


Comments 17 comments

eHealer profile image

eHealer 4 years ago from Las Vegas

Amazing hub, how painful the shock looks and reminds me of my sisters face when she got the news. Soon after, she was so in love with her son it didn't matter. Once she faced it, it did matter anymore. Thanks


HealthyHanna profile image

HealthyHanna 4 years ago from Utah

Wonderful hub. There are so many parents, sibblings and children dealing with Autism. My grandson was just (finally) diagnoised with Aspergers. He is nearly 11 and if he would have been diagnoised years earlier when he was having beheavioral problems, it would have been easier on all of us. As it is, he has grown up feeling like the 'kids at school don't like me'. That breaks my heart. But the truth is, he is hard to like. I guess that is why we are born into families...so there are always (or supposed to be always) someone to love you.


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

Thanks very much ehealer. An autistic child is a very interesting person and what goes on in their heads is amazing. So as you say once you come to terms with the diagnosis there really is a lot of joy to be had.


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

I know what you mean about 'other kids not liking the AS child.' That was me and it is sooo hard. Even as an adult in the workplace I always found that there were always a few people who just didn't take to me and it hurt because I always wondered what was I doing wrong? Now that I know so much about AS I know exactly why they felt that way. We are often hard to like, for me what might appear as my 'aloofness,' to others is actaully just me staying quite and observing because I don't feel confident enough to join in or some days I just don't have the energy for all the 'social niceties,' because for us Aspies it's a lot of draining, hard work as it doesn't come easily. My heart goes out to your son as for me the teenage years were the hardest but the best you can do is try to get him to educate himself as much as possible about AS and let him know there are lots of other teenagers out there like him. Has he read Geeks, Freaks and Aspergers Syndrome by Luke Jackson? He wrote it when he was 15 on his experiences of being a teenager with AS. I loved that book and thought yeah that was me as a teenager definitely. If I can ever help in any way then please do email me.


CyberShelley profile image

CyberShelley 4 years ago

Hello again, I am glad you had the strength to write about your challenges, it makes it all so much easier for us to understand - especially as my friends' mother teaches autistic children.


aspieadult profile image

aspieadult 4 years ago

Nice hub. I think I will write one about my experience with my father. I am 95% sure he is also on the spectrum and our brains have always been able to "click", in fact he is the only one who can make me feel calm in any tumultuous moment. I never realized how much I depended on his company to help me through tough mental moments until I experienced a prolonged absence from him. I see myself growing up and having a lot of his traits and I even inherited many of his interests, but I hope not to inherit many of his struggles. He never taught me to play with other kids or be "normal" (indeed he is quirky himself), but I have learned from him how to laugh off anguish and adjust my perspective so that I can function when things go awry. I also know he has helped at least one autistic kid at school because of his ability to "click" with people on the spectrum. He is a high school math teacher and there was one boy who had autism and was in his class. My father apparently shocked the entire staff and boy's parents when the boy proclaimed that he loved my father and his class and smiled (my father would make him smile and laugh in class). I guess the boy did not, or very rarely did, smile, and it was unusual for him to express preference for one teacher. So you see, you have more to offer your son because you are on the spectrum and can use your own experience to teach him. He is very lucky to have an AS mom :)


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

Thanks for your comment. Lots of other 'quirky,' people in my family too. More undiagnosed Aspies out there than diagnosed from my experience anyway. I meet them everyday.


cfin profile image

cfin 3 years ago from The World we live in

My cousing has autism and was not diagnosed until he was a teen. He always acted out since I have known him. They took him from school because they teacher couldn't teach him. He refused to speak for long periods of time. His little sister is 4 years old and cannot talk yet. I feel that she might have asbergers syndrome. Her parents said the doctors disagree.

Originally they said he had ADHD. Before her was diagnosed, I always told him it was not a bad thing, that he had a gift. And in some way it is true. He is extremely advanced with computer programming and scientific subjects,. Since he was diagnosed. He told me that everyone treats him bad. He feels that he is a liability and something is wrong with him. I really feel, that in the years to come, there will be a unique place in society for individuals with these "syndromes". None of us are the same. Some of us (especially me) have some extremely strange and complex characteristics. Some of which make it very difficult to live a normal life.

I really hope to see a day where the world will not just accept people with these "syndromes" or gifts. But the world will go so far as to have occupations that fit these people. Then you wouldn't have to grieve or accept. Maybe someday.


thewritingowl profile image

thewritingowl 3 years ago from Ireland Author

Thanks for your comment. I am delighted to say that the world already has many, many people with Aspergers Syndrome, High Functioning Autism and other syndromes who are already highly accomplished in their own fields e.g. Temple Grandin being the most commonly given example.

It is well documented too that many architects, scientists and as you say computer programmers like your nephew are actually so gifted in their chosen fields because they have autistic brains. It is particularly hard to be different in your teenage years certainly and I have to say as I was a teenager with undiagnosed Aspergers myself and I feel now that it would have been a tremendous advantaqe to me to have known back then that I was having difficulties because of my Aspergers Syndrome. Also I would have really liked someone to tell me that with the right guidance my AS didn't have to hold me back at all. That was my personal experience and I appreciate too that not every autistic person feels that way. I love my son hugely as he is but I just wanted life to be easier for him and it would be more straightforward definitely and less complicated it he was Neurotypical. I think so anyway because Autism undoubtedly brings additional issues to the table. That too is why many parents grieve and accept i.e. out of love and concern for their kids. For me knowing why felt 'wrong,' or a 'liability,' i.e. because I am autistic helped me hugely and hopefully this will be the case for your nephew too when he has had time to really understand what Autism is. We can but hope..


cfin profile image

cfin 3 years ago from The World we live in

Yeah, he was in his teens when diagnosed. It seems to be pretty common here still. People also openly shun people with aspergers and treat them horribly. When I looked into it some more, my wife, who is from here, has told me that its common to be misdiagnosed and she worked with a man who was only diagnosed in his 30's. Recently I was enraged at my work colleagues when they insisted the recent shooting happened because of aspergers. This was a widespread feeling at the time, and it made me so angry.

I did want you to know though that you are not alone, and its not just an Irish issue. Although Irish people seem to be the only ones willing to talk out about the lack of care and understanding. It does help to think, that if we are both living in two of the richest 20 countries in the world. Its horrible to imagine how the lives of those in less wealthy countries are treated. But look how things have improved, and because of good people like you, they will continue to improve :)


thewritingowl profile image

thewritingowl 3 years ago from Ireland Author

Personally I think a doctor telling me to ignore my son's autism 30 odd years after a different doctor said the same to my mother means we have an awful long way to go yet! Unfortunately too here in Kerry the funding for autism is being cut every year and waiting lists continue to get longer. In the current climate it would be an achievement to maintain services as they are I think (which isn't happening here in Kerry anyway). You must have much better services in Westmeath than down here if they are actually improving in the current recession? I am glad that at least the autistic kids up there are getting something in the way of therapy. Thanks for your comment too.


Anomalous Minds profile image

Anomalous Minds 3 years ago from Washington, D.C.

I went through the stages of grief when I found out that my adopted son has FAS, but I did not react that way when I learned that my older sons are autistic. The neurologist, anticipating an emotional reaction, made me sit down before she broke the news. I simply said, "Oh. OK. Thank you, that explains a lot." I already suspected Asperger's Syndrome after doing a little (OK, a lot of obsessive) reading. I found it a little amusing that a word exists to describe the quirks that run in my family.

Perhaps it is because my children and I have Asperger's Syndrome that I don't see Autism as a tragedy. Then again, Dr. Temple Grandin was nonverbal and considered to be a hopeless case as a child. She doesn't see Autism as a tragedy, either. The social ostracism, the unfortunate stereotypes of autistic people, the idea that Autism is a disease comparable to cancer - now that is a tragedy. It causes parents to feel hopeless when their child receives a diagnosis. If Autism were accepted as a difference - not a disease - parents would be spared a great deal of anguish. Sure, Autistic kids are a lot of work and can be incredibly frustrating, but they are amazing kids. It is worth the extra gray hair!

Thank you for this Hub. It is one thing to embrace Autism in yourself, but embracing Autism in your child sets a great example for others. Hopefully this Hub will save another parents from tears.


thewritingowl profile image

thewritingowl 3 years ago from Ireland Author

Thanks very much for your comment Anomalous Minds. Yes I agree I have read some of Temple Grandin's books too and it was terrible to read that when she was first diagnosed with Autism her mother was told to put her into an institution and forget about her. Shocking to think that was the advice back then. We have progressed since then but we have a long way to go still too. I think it is still shocking today that no autistic people are involved in any of the decision making processes about them. I have pointed this out too to Autism groups but so far it has fallen on deaf ears.

So we just have to keep going and writing and trying to realize awareness of us as capable people and not as unfortunate tragedies of nature. I have read also that the treatment of autistic people is the last great violation of human rights in first world countries and I thought yeah that makes a lot of sense to me definitely.


Iheartautism profile image

Iheartautism 3 years ago from canada

Awareness is important, and so is managing the symptoms. I wish great luck and compassion towards you and anyone else who still feels the sting of that diagnosis.


the1riot profile image

the1riot 3 years ago from South

Wow. Now you have me wondering if I might be on the spectrum as well! I recently discovered that I passed all sorts of things to my children like Hemi-hypertrophy, Auditory Processing Disorders, and, who knows--maybe Autism? I had never even considered that possibility before. I wanted to comment on your husband because I felt like I could've been writing this hub myself. Although my husband is still in a "slight" anger phase, he is in complete denial as well. He claims that there is nothing wrong with any of our children (they are all diagnosed and receiving help through the school system), claims that they are all getting better and says, "they are just fine". His anger does show that he realizes that the problems are real, but after years, he is still unable to accept the diagnosis. I look forward to reading more!


thewritingowl profile image

thewritingowl 3 years ago from Ireland Author

Thank for commenting. It is so common for one partner or some other family members to never accept their child's diagnosis fully. That's often the hardest part of a diagnosis like Autism or Developmental Delay or a condition like Fragile X Syndrome i.e. some will claim 'he is just fine. Don't be making a fuss or imagining things. He'll be grand.'

Or, 'he'll be fine when he talks and he'll do that in his own time.' I could go on and on forever listing the things that have been said to me and unfortunately are still being said to me even though my son's diagnosis is two years old and these people know this.

I have never heard of Hemi-hypertrophy before. I must discover what that is. Here in Ireland they have only barely accepted Autism as a condition (in some parts in others that is still often not diagnosed too) so we are fairly behind at diagnosing lesser well known conditions.


the1riot profile image

the1riot 3 years ago from South

Hemi-Hypertrophy is an extremely rare genetic disorder that causes an overgrowth on one side of the body. My 6 year old is almost 2" longer on one side, one foot is 2 sizes bigger than the other, and when he is in a growth spurt--one side of his tongue is much larger than the other (which affects his speech etc.) The condition also causes fast growing stomach tumors which need to be caught early, so we are in the hospital every 6 weeks for bloodwork and stomach ultrasounds. No doctors here have ever encountered it, and I have had to educate them based off of other parents experiences and knowledge from a Yahoo support group. It can be heriditary, and we now know that my mother and great-grandmother had it. For me, I was still grieving from this diagnosis when my son was diagnosed with Autism, and it helped to put it in perspective. When you are worried about your child getting Scoliosis, cancer, having heart problems because 1/2 of his heart is huge, not being able to speak and drooling because his tongue is too large--it makes you realize that there are things much worse than Autism, and that makes it much easier to accept.

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